Also, my Plasmapharesis was done in peripheral veins in my arms so that is an option too.
Mashrub, I am so glad it was a success for you! Is it true the phase 2 will be over soon? will there be a phase 3? Will there be a placebo group in phase 3? I just sent you an email and I hope you don’t mind.
Paula, are you participating in the sct? I wish you great success! Do you know if there is a deadline for application?
Thank you all for the info.
That’s great Paula! I hope they accept you! I am not sure what phase they are in… All I know is that the nurse said it looks like I am a candidate & that I go up next month for the rest of my testing & to meet the Drs. I really hope it all works out for all of us… Everyone I have been in touch with that has had this done said it’s life changing & that they have been in remission since they did it… Fingers crossed… No I am putting it out to the world… I will be accepted & this will change my life! I am positive about it. There is nothing else left for me… Right now I get IVIG every 2 weeks… Not a life for me. Send your records to Dr Burt & try! It never hurts to try!
Heather
Heather, I am so excited for you! I wish you the best success!
I hope I will be a candidate. But since I still can walk, although with a terrible gait, I am not very sure they will accept me.
@Heather: I emailed Paula about where to send everything, there was no address where to send it in the email she sent me with the pw she sent me to fill out. If you have address can message me the address?
They want me to do IVIG twice a week now, I’m trying to get off baclofen, it’s not helping me and maybe making me weaker.
We will see.
@gslm: how is your cidp progressing?
@gslm… I can walk & they know it… Get a hold of them & they will send you the guidelines… Walking or not walking has nothing to do with it. If you are on treatment & you keep relapsing before 3 months are up than you are a candidate. What’s the worst they can say? No. What’s the hopeful thing they can say… Send your records up here & let’s see if we can help… You have nothing to loose.
True! Paula at dr Burt’s had me tell her my story and she knows I can walk, although with a can! Heather is right, the worse she can say is no.
@Paula… The address for them is 446 E Ontario Suite 10-1000 Chicago, IL 60611…, but in the meantime have your Dr office send Paula some of your records & all of your tests. That’s how I got in.
Heather and Paula, thank you for the info! I truly appreciate it. So many kind and knowledgable people here! I am blessed to have found this site.
Heather, when you say relapsing before 3 months, do you mean go without treatment for 3 months? I cannot go without treatment for 3 months. If I did, I would go down hill badly.
@Heather: my tests were from different hospitals, I have a neuro, I can ask her if she’s heard of it and see if she will send my info for me. If she says yes, I will still send info myself.
When I went for evaluation, I was walking. The criteria for the study is on the clinicaltrials.gov website. Type in CIDP and the study is under Hematopioetic Stem Cell Transplantation in CIDP. The criteria states failure to respond or incomplete response to steroids and IViG or Plasmapharesis. However, I responded to IVIg but was not able to tolerate it. It caused aseptic meningitis after treatments. There is other criteria also but like Heather said all they can do is say No. They have also taken patients outside the study on a compassionate care basis. Israel-Dr. Slavin also does HSCT. He collaborated with Dr. Burt at one point and his SCT protocol is non-myloablative like Chicago.Which means it does not totally wipe out your immune system making it safer. I still have up and down days. It’s not a 100% but I am nothing like I was before. It was not a piece of cake for me. I was really sick from it but I would do it again in a heartbeat to feel this much better. A FB page to consider joining is Hematopioetic Stem Cell Transplant -MS & Autoimmune Diseases. It has a lot of good info under files and most on there are post transplant patients for a variety of diseases. Paula Gozdziak,the CIDp nurse’s email is ■■■■■■■■■■■■■■■■■. Mary
Paula will also email you the criteria with the work sheet to fill out if she thinks you will be a good candidate, she’s only in the office Tuesday-Thursday.
@marshrub… Do you still get CIDP symptoms? Do you still do any CIDP treatments? What do you mean when you say you have good & bad days?
Heather
@Heather, I am not on any CIDp treatments but I am still on pain meds. My burning pain has not resolved since my last relapse(prior to Stem cell). Stem Cell only halts the disease process but nerves still have to heal on their own. The first 24 months is the best regeneration time so I still have almost a year to go for the best healing. Some of my pain may be permanent because I’ve had this for 10 years but the doctors are still optimistic that it may go away. At least, I am only fighting some pain and not the disease(and all the other symptoms). That is why I advocate not to wait until you are worse. Bad days are when I have overdone and pain kicks in, but my overdoing might be from 5 miles of hiking not walking to the mailbox. No comparison. I still am more fatigued on some days than others but there again I am doing more physically than I have in years and I am growing a new immune system. For several months after SCT you will be tired from chemo and rebooting of immune system alone. That is normal. My advice after SCT, is to be patient and listen to your body. When it’s tired rest. Pushing it only makes it worse. Its two steps forward, one step back for awhile.
That’s why I want to do the SCT now! I’ve only had GBS/CIP for a little over a year, but I don’t want to get worse as years go by before doing this!
Hi Everyone,
Thank you so much for the SCT info. I contacted Paula, and I am gathering my records this week and getting them to her. We live in Dallas, but my husband and I agree it is totally worth the trip. I was diagnosed with GBS 27 months ago, and cidp about 24 months ago, tried ivig for 3 months with no result, and have been receiving plasmapharesis every 10 days now for almost two years! ( I have bilateral vortex ports that were placed a few inches below my clavical bones.) Paula with Dr. Burt said it may be March before I get an appt, but I know my cidp won't change at all, so it is definitely worth the wait. Thank you everyone for the insight and info :)
@Mel. I lived in Frisco for 7 years. That was where I was diagnosed and I can empathize with being chained to treatments. Have you tried any of the immunomodulating meds(Imuran, Cellcept)along with Plasmapharesis? Is Plasmapharesis keeping you stable? iVIG was keeping me stable but still felt an overall decline in baseline with each year. Plus, IVIG gave me aseptic meningitis. Plasmapharesis did not keep me stable at all.
Frisco-wow-that's crazy-we've been in Plano for 5 years. Yes, they had me on Cellcept for about 9 months with no results. I feel pharesis is keeping me stable at this point-like I've reached a plateau. About 12 months ago, we could tell improvement, but now its really just keeping things at a plateau for me with no real improvements.
@Marshrub… I have had this disease for 12 years (from age 22- now 35). It was under control with IVIG about every 3 months (sometimes I went longer) up until this past year. All of a sudden IVIG stopped working as well. Then 1 day it stopped working all together. That’s when they started plasma pharesis. That only lasted for 3 weeks the first time. Then I went into paralysis for about a week. They did the plasma pharesis on me again & it got me back on my feet. The unfortunate part was that it only lasted 2 weeks & then I would get admited to the hospital for 10-12 days for more pharesis. Then they decided to try Rituxan… They put my back into paralysis again but this time I was in the ICU & almost on a ventilator. They almost killed me! I demanded they start the pharesis on me again & was walking within 10 days. Thank god all my nerves went back to normal again! I have suprised EVERYONE with the way I bounce back. That’s why I want to do the SCT asap… I don’t want any permanent damage. I am a mother if 2 with a husband. I don’t have time for this disease or it’s bullshit… Sorry I really hate our disease. Thank you sooo much for answering these questions for us. You give people like me hope. I am so glad you got it done. I want to be an advocate like you. Thank you again!
Heather
@Mel… Have faith Mel… They will accept you to this clinical study & it’s going to change your life. I wish you he best if luck. I made my appt. with Dr Burt back in the end of November… It takes a long time to get in with him but the time will fly by. Wishing you the best of luck. We are here for you.
Heather